The precipitating event in Road Map to Holland is the delivery, 5 days after Avery's premature birth, of the additional unexpected diagnosis of Down syndrome. Later, through Dr. Skotko's research (www.brianskotko.com), I find that my experience is not uncommon, and I wonder how things might have been if I'd known earlier, or if the Dx had been handled in a different way.

What were your experiences? How was your diagnosis (prenatally, or postnatally) delivered? How were your thoughts and feelings different from the ones I describe, how were they the same?

_________________
Jennifer Graf Groneberg

We got the diagnosis VERY prenatally....Kennedy was 6 months old. My situation is very different form others. We had 5 mo appt for kenendy at her ped's and he heard a murmur...went back the next day for an echo..Complete AV Canal Defect..the cardiologist actually mentioned she may have Ds as this type of defect was common in kids with Ds. So, long story short....the Ds never ever bothered me. i just wanted to get the surgery done and get my little one healthy!

_________________
Beth Mom to Cameron 2/26/2000, Kendall 6/25/2002 and My Lovely Kennedy 9/10/2003(DS)

We found out the following day after Abby's birth.

I actually told DH the night prior that it looked like Abby has Down's eyes. We laughed it off. My mother and sister noticed the features of Abby at birth. With me being tired from the event of birth, I didn't really look at Abby till that evening late. A pediatrician in our pediatrician association came in to tell us of his findings of markers and proceeded to ask for permission to test.

I was devastated, depressed. It took me some time and therapy to get over the diagnosis. With my second born, I wanted to KNOW prenatally. We did all tests (mius amnio) available, but found that we stressed ourselves more by trying to find out.

Funny, our Ds Association has generated a new program called "Changing Lives" where we have hired an RN to talk with doctors, hospitals, nurses, to help deliver the news of Ds more gently and having them more informed of what Ds is today and what is available.

_________________
Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06), Katie (08/12/08.)

We found out about 5 minutes after Mikey was born. The doctor was wonderful and was very gentle in the way he told us. They had to take Mikey away for tests and they gave us a private room and let all the family come in to talk to us.

_________________
Tom

Dad to Beth (17) and Mikey (12 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Ethan's diagnosis was given postnatally, 10 hours after he was born.

I'd had a c section so was feeling pretty sore, the midwife had just got me out into a chair, and their was me looking very glamerous in my hospital gown with drips and drains attached!! Mike had gone home to see Georgia and tell her all about her new baby brother, she was also excited about daddy taking her into town to buy a little christmas tree for her bedroom.

Ethan was fast asleep in his basinet when the midwife knocked on the door to say the baby dr's were here to see me. I remember thinking how quick they'd come to do Ethan's check's as usually it was done prior to discharge. The paediatrician and another senior dr stood opposite me against the wall with the midwife next to them, I knew the dr's through working on the Children's ward but could tell they obviously didn't recognise me. Then came lots of questions, 'how are you doing?', 'any problems?', 'is he feeding ok?,' and 'who do you think he looks like?, I started to feel a little nervous about all these random questions and then came the 'bomb'. The paediatrician said that the midwife on the delivery suite noted that some of his 'features' may indicate DS.

I just felt numb, followed by complete shock, I was trying really hard to think what to say, to ask, but all I could feel was the huge lump in my throat as I started to cry. The Paediatrician then said they would do a blood test in the morning and off they went!!. I remember demanding to be helped back into bed and to be handed Ethan, The midwife asked if I wanted to get hold of my husband (errrr yes!!!!!!!!!!!) As I held Ethan I scanned his face for signs of DS, one second I could tell in his eyes, the next, nothing. Poor little guy, I was just crying non stop and kept saying over and over how that I was sorry, I felt the need to blame myself.

Looking back I just remember how alone and lost I felt, not once did the midwife come and sit by me when the dr's were in my room, no comforting words or gestures, it was truly awful. Having to tell Mike about Ethan having DS was one of the hardest things I've ever had to do.

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

Oh, Jo. Reading your post, I could imagine it all, I was right there with you. And it brought tears to my eyes. Telling Tom was the hardest thing I've ever had to do in my life, too.

xo

_________________
Jennifer Graf Groneberg

I actually received my diagnosis prenatally. I was 17 weeks pregnant with my 3rd child. I remember it was a Wednesday afternoon and I was home early from work. My Doctors' office called and asked me to come in. I thought it was with regards to a concern I had called about earlier in the week. I got into my car and drove the half hour down the highway to the office. I remember my Doctor, whom I've know since I was 15 say the words "your MSS (maternal serum screen) came back high for Down Syndrome" but I honestly can't remember anything else. It was like one of those out of body experiences you read about. I left the office and don't know how I made it home thru the uncontrollable sobbing! The Down Syndrome was confirmed a week later via amniocentesis. Further ultrasounds would show several markers including AVSD (heart defect).

I now realize just how fortunate I was to receive this information prenatally as I was able to ensure a safe delivery for my little man and to have several months to prepare myself as well as my other 2 children for his arrival. I became almost addicted to anything I could find with regards to Down Syndrome. Hours were spent on the internet and many many books were purchased and read. (Road Map to Holland was released after Matthew was born but I had it pre-ordered).

I was on a plane back from Washington DC, by myself, getting ready to take off when I got a hold of the perinatologist who told me the odds were 1 in 16 that my child had Down syndrome. I was 15 weeks along, I believe. Wow, that was a long 2 hours by myself. I called my husband right after I got the word, as they were closing the doors, and he basically said we'll be ok, we will deal with this.

I wrote down everything I thought and all my worries on the back of an envelope on the flight...it was the only paper I had that I could write on. I wrote down "Why Us?" and then immediatly answered, "Why not us?"

My first instinct was I needed the amnio. I had about 10 seconds of, I should abort this baby. Followed by 24 months (the entire time since those 10 seconds) when I've regreted that I even let that thought cross my mind. Rational me kicked in and realized that I loved this baby no matter what, and could never do anything that might harm him or her just so I could know for sure. So I didn't do the amnio.

I did quite a bit of research, mostly trying to convince myself that the baby didn't have Down syndrome for the rest of the prengancy. All of my level 3 ultrasounds and echo were perfect. In my heart I always felt like there wasn't anything wrong with her and I still don't.

One night I found this picture:
http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/down-syndrome-center.htm

and I said to my husband, we can deal with a child like this. I remember looking at the baggers at Kroger and thinking "I would love him if he were my child."

Anyway, my best friend from the 6th grade delivered the baby. I was 2 weeks early, and it was the middle of the night. I was about 8.6 cm dialated at the hospital, and almost didn't get the epidural. I did get it, and pretty much the baby came about 15 mintues later. When she was born I said "Is she ok megan?" and she said "she is beautiful and she is perfect and I'm quite sure she has down syndrome." I said really? Are you sure? She said she was wrong once, but she was pretty sure that Violette did have DS. I was SHOCKED, to say the least. But in terms of how I found out, I think I had the very best possible way of knowing for sure...

_________________

These are beautiful stories, ones that give me great hope that the new prenatal tests can truly be used to help families. Thank you for sharing them in this forum.

xo

_________________
Jennifer Graf Groneberg

We got the diagnosis in the delivery room. I had a very fast delivery, we barely got to the hospital, and it was hectic and crazy in there. I was bleeding and they took the baby to the other side of the room, but I didn't think much of it because I figured they had to fix me up. I was a little confused because my husband wasn't going over to look at her; later I understood that he knew and was in shock.

Finally someone came over and said, "We're seeing some signs of Down syndrome."

They tried to talk me out of it, oh we see this all the time and sometimes kids look it but they don't have it, but as soon as I saw her I could tell.

A geneticist came to the delivery room pretty quickly, with a big packet of info. She talked about some of the physical signs they were seeing, and about what DS might mean. She did do all the "right" things as far as telling us. But the whole thing was a blur, really. The OB who delivered was very very kind, and talked to me for a while about the testing we'd had and how we didn't know.

But then she went to the NICU and I spent the next day or so numb and upset, and the rest of the hospital staff...well, some of them were great and some were not, and I think there needs to be a greater training program for ALL employees when delivering ANY bad news.

Here's one example: the hospital has that nice cozy happy new baby! unit, and they offer meals on demand. You just call up whenever you want and order and they bring you room service. This is great for people who aren't overwhelmed, but I was pretty shocked didn't eat anything the whole time I was there except part of one muffin my husband brought me from Dunkin Donuts.

Sorry, I'm rambling on. I don't know that there is a good way to give the diagnosis. But I wish there'd been more attention paid to my specific reaction. The geneticist did all the right things, but it's not a one-size-fits-all situation.

So much of Road Map resonates with me, but particularly that first post-diagnosis time. Wanting to run away? Oh, yeah.

I knew the minute they layed Lacey on my stomach that she had DS although all of my family that was in there said I was wrong. The dr. and nurses wouldn't look me in the eye when I kept asking them. I just knew in my heart I was right and that she had DS.

I am extremely glad I didn't know before because I am a worrier and I had already gone into preterm labor 2 times with extended stays in the hospital. I would of probably lost her from all the stress of the unknown. I think God has a plan and that his plan worked out the way it was meant to be with us finding out the way we did after Lacey was born. I love her before I met her but adored her after I got to know her DS and all~~

_________________
Renee~~ mom to Haley 10,Kassidy 8, & Lacey(DS) 4 & wife to Chris!!





* An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

God knew I couldn't handle knowing prenatally. That is why we found out about 10 mins after he was born.

If I would have known prenatally....I would have worried myself sick. I would have googled searched everything and read all the outdated information. If he was diagnosed prenatally....they probably would have also detected the heart defect...and that would have sent me over the edge. I know in my heart I would have been mentally and physically unwell if given the news before hand. Terminating would have never been an option.....but I know I would have wondered how I could handle a child with special needs.

Learning at his birth brought it's own set of circumstances. He was born on June 7th....we were told he had Ds....and we were also told he would need open heart surgery. We cried alot of tears about all the unknowns.

We of course celebrate his birthday.....and time heals....but I will always feel guilty I cried on the day he was born. No innocent baby should have his parents cry on the day they come into this world. Our tears...were that of fear...but either way...he is was a blessing and I feel very guilty over the tears.

We also celebrate August 5th. That was the day his life was saved. His heart was repaired...and each year we go away on vacation to celebrate his life. It's the day I had peace. Peace that my little boy was in fact....going to live.

_________________

Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

DanielsMommy wrote:

God knew I couldn't handle knowing prenatally. We of course celebrate his birthday.....and time heals....but I will always feel guilty I cried on the day he was born. No innocent baby should have his parents cry on the day they come into this world. Our tears...were that of fear...but either way...he is was a blessing and I feel very guilty over the tears. We also celebrate August 5th. That was the day his life was saved. His heart was repaired...and each year we go away on vacation to celebrate his life. It's the day I had peace. Peace that my little boy was in fact....going to live.

I feel the exact way about all the tears I shed on her grand entrance day.. Every year on her bday I tell her how sorry I was for crying those tears and that now I only cry tears of joy for the amazing little girl she is..

We also celebrate Dec. 28, the day Lacey's life was saved as well~~

_________________
Renee~~ mom to Haley 10,Kassidy 8, & Lacey(DS) 4 & wife to Chris!!





* An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

We had a prenatal diagnosis. Sorry if you don't want to hear the whole story, but I feel compelled to go through it again....

I had two miscarriages before Quinn and in both of them they could not see the heart beat. So I became obsessed with the heart. In the 8th week with Quinn, my ob/gyn could see the heart. I thought "oh cool now there will be smooth sailing." My ob/gyn, who ended up going on maternity leave herself after this, told me that she wanted me to see a genetic counselor and perinatologist just as a formality because of my age. She said she has everyone do this. The "fill in" ob/gyn missed doing the screening test, but I thought "no biggie, this is going to be smooth sailing, no problems." The day of our appointments I really didn’t take the meeting with the genetic counselor seriously; it was just formality because I was 35 years-old. Nothing that big ever happens to me anyway. The ultrasound was going fine – heart looks great, it is a girl!!!! Then WHAM – “we see some mild ventricularomegaly,” “might not be anything,” “would recommend an amnio.” I went ahead with the amnio, nothing that big ever happens to me anyway, so what would it hurt? The next day a telephone call wakes me up from a nap. The genetic counselor says “I’m sorry to tell you that the baby has Trisomy 21.” The FISH results came back and I guess everyone, including Quinn, didn’t realize that nothing that big ever happens to me. I felt so stupid, here I was focusing on the heart when there is so much more to worry about – how could I be so foolish? I had to break the news to my husband and stay strong as it is always expected of me.

As for the pregnancy, things progressed. Appointment after appointment – specialist after specialist. But the perinatologist was positive. He wasn’t the most empathetic person in the world, but as these appointments progressed, I could see a change in him – an excitement. He would talk about how great that it is that Quinn doesn’t have any birth defects, how great it is that she is growing all so so big, how great it is that there are no markers (the mild ventricularomegaly went away!). He would actually look excited. My ob/gyn was excited and supportive. Maybe things would be ok after all. Then we moved to having to do the non-stress tests and biophysical profiles. These tests were making me stressed. The final week (Week 35) I had a breakdown when I failed a biophysical profile and had to do a non-stress test and had to cancel my lunch plans. Well that little girl came on this earth shaking my life up, as she has done since her conception. On the first day of the 36th Week I did not feel her move. The doctor made it clear that I should go in when that happens, so it being a Saturday; I paged the doctor on call. She told me to come in to the hospital to get checked out. I told my husband and two sons not to worry because I would only be a little while and drove myself to the hospital. Nothing that big ever happens to me anyway. I got checked out, things looked fine, only that I had to do a non-stress test (yippee given my breakdown a few days earlier) and then I could go home. I called my husband to say I would be home by 10pm. I was all set up for the test and laying there by myself when my water broke. Oh that girl – won’t she give me a break – doesn’t she know that things like this don’t happen to me? Then there was more, she was breech and for the first time I had to have a C-Section!!!!!

Overall though my doctors were the best and I wouldn't have changed having a prenatal dx for the world- I only had one jerk doctor who was a fill-in for my ob/gyn when she was on maternity leave and she even apologized for him when I told her what happened. The one thing I would change though is that I think NEVER EVER should a person be told over the phone if it can at all be helped and then to make them be the bearer of bad news to their significant other is the most brutal thing possible. I forgave the genetic counselor later though when she came to visit us in the hospital and went on about how beautiful Quinn was.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age nine), Aidan (age five) and Quinn (October, 2007 - DS, IS)
http://quinnscrusaders.blogspot.com/

Though usually in life I am a very "need-to-know" person, I am very, very glad that I did not know prenatally about Benjamin's diagnosis. I would have done nothing but worry and feel sorry for myself and WONDER. As it was, I was able to enjoy my pregnancy (I *love* being pregnant) and was blissfully unaware that my baby had anything wrong with him. I think it was good for me for it all to be revealed after he was born. We were able to go through our time of mourning and be surrounded by wonderful friends and family.

_________________




Angela
Wife to Matthew
Mom to Andrew (3/24/06) and Benjamin --4/24/08 DS--VSD & ASD repaired 10/3/08
Intestinal obstruction repaired 1/13/09
Hypospadias & ventral hernia repair 8/21/09
Expecting Baby #3 in April 2010!



www.theamicks-angela.blogspot.com

I wanted to add this:

About an hour after Benjamin was born, my OB came into the recovery room. My mom and husband were talking a few feet away. I'm pretty sure I was holding Benjamin, but I can't remember. It is kind of all a blur. He approached my bed solemnly and I could just tell that something was horribly wrong. The look on his face said it all. But even then I thought that something was wrong with me. Like something had happened during the C-section and I was going to be unable to have another child; they found a suspicious lump--something. Anything other than what it was. Nothing could have prepared me for his next words. He put his left hand on my right arm, took a deep breath, and said, "I'm 99% sure that Benjamin has Down syndrome." All the clichés you hear are true. ‘It was like the wind had been knocked out of me.’ ‘I was like a deer in the headlights.’ ‘I can divide my life into two sections--before I heard those words and after I heard those words.’ My first thought was, "No. This can't be. This isn't true. This is a bad dream." I vividly remember staring at a specific spot in the upper right-hand corner of the ceiling. Like if I stared at that ceiling tile long enough and hard enough, that my doctor would tell me he was wrong. That the whole scene would play in reverse and he would back up and leave. And I could get back to my normal baby. The one I wanted. The one I planned on having. But he kept talking. I could tell it pained him to have to break this life-altering news to me. I felt bad for him. I had so many questions that I was afraid to ask. It was all so new. I remember thinking, "That's it. We're finished having children. We wanted four, but we're done now. He'll always live with us. He'll be such a burden on us. We'll love him, but he will be dependent on us his whole life." Then I felt trapped. Like I couldn't breathe. I heard my doctor. I nodded my head. But I was silent. Because the things I was thinking you don’t say aloud. You don't say what’s in your heart, deep down. That you don't really want this kind of life. That you love your son but no, thank you, I didn't sign up for this.

_________________




Angela
Wife to Matthew
Mom to Andrew (3/24/06) and Benjamin --4/24/08 DS--VSD & ASD repaired 10/3/08
Intestinal obstruction repaired 1/13/09
Hypospadias & ventral hernia repair 8/21/09
Expecting Baby #3 in April 2010!



www.theamicks-angela.blogspot.com

I had kind of both pre and post. We had 2 soft markers but didn't do any other testing because it wouldn't matter. I did some research and let it be, perhaps even forgot about it.

When Vinnie was born I knew. I didn't say anything to anyone. Nobody seemed to notice, it was like my time to just enjoy him and not hear DS. I even asked the pedi on call about the extra fluid on his kidneys but never said we had soft markers for DS. Jayson was holding him and said "he doesn't look like he had DS" or something similar and I just said "ok". He knew at that moment I thought DS. Then of course when they took Vinnie to the nursery Jayson went with them and asked. They were on the fence and said they would see what our pedi said the next day. She too was on the fence but talked to me about it and how she has a couple patients with DS. She did a great job talking to me.

When the tests came back a week later we had been moved to a different hospital because there wasn't a NICU at the hospital I delivered at. We were just about to leave so we could pick up Rudy and get some rest when the doctor on call came over. She said all the tests look great but "one test came back positve", it was here that I felt that sucker punch, "the one for Trisomy 21". I already knew but to hear it was something totally different and then the fact they we were leaving, I couldn't even stay to just hold him. The next day we talked to the genetics lady, she was amazing and I wished she was the one who delivered the news the night before because she gave us so much more than just "it's positive".

_________________
Joanne, wife to Jayson, mom to Rudy (12/27/05) and Vinnie (2/6/08 Ds)

Quote:

I vividly remember staring at a specific spot in the upper right-hand corner of the ceiling. Like if I stared at that ceiling tile long enough and hard enough, that my doctor would tell me he was wrong. That the whole scene would play in reverse and he would back up and leave. And I could get back to my normal baby. The one I wanted. The one I planned on having. But he kept talking. I could tell it pained him to have to break this life-altering news to me. I felt bad for him. I had so many questions that I was afraid to ask. It was all so new. I remember thinking, "That's it. We're finished having children. We wanted four, but we're done now. He'll always live with us. He'll be such a burden on us. We'll love him, but he will be dependent on us his whole life." Then I felt trapped. Like I couldn't breathe. I heard my doctor. I nodded my head. But I was silent. Because the things I was thinking you don’t say aloud. You don't say what’s in your heart, deep down. That you don't really want this kind of life. That you love your son but no, thank you, I didn't sign up for this.

I know EXACTY how you feel. I had a c section and my obgyn came into my recovery room to tell me. My husband already knew (they told him moments after he came out...but I was still being closed up). My husband had already told my parents. So in walks the 4 of them.....and I was really groggy. I have a suspicion they gave me some sort of sedative because I don't remember being so groggy with my daughter. But...anyway.....my ob comes over and tells me " Your son is doing wionderful...he's beautiful. However, I have to tell you...we strongly suspect her has Ds. He said we need to run blood tests, he said but I am fairly certain...so please don't hold out hope the test will be negative. ". I stared up at the ceilinjg...and must have fallen back to sleep. I woke up and asked my husband "Did the doctor just come in here and tell us the baby has Ds?". My husband said yes. Later than day, my husband told me I asked him no less than 10 times. He said I'd drift in and out of sleeping..and each time I'd wake up and ask him the same question. I don't really remember asking it more than once....but I remember the spot on the ceiling that I was looking at.....hoping my the answer woudl be different the next time I asked it.

_________________

Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

Thanks for the reminder that this is here! This is something I've discussed privately. Even after all of the GIFTS stories, it was still different to read such a detailed account of an after-birth diagnosis. I definietly had a prenatal diagnosis of both DS and AVSD, and for me the experienece of "diagnosis" and its aftermath were COMPLETELY separate from the experience of parenting a child with DS and dealing with the physical realities of feeding/ nursing issues, and surgery. That rip your heart out grief was all over by the time Gabby was here. Although we dealt with stress after birth, it was not complicated by adjusting to a diagnosis.

Reading Roadmap, where you dealt with premature birth, twins, diagnosis, nursing /pumping, and surgery for one baby, it was sort of a big clump of issues all at once and you experienced that quite naturally as that. But as a reader whose experience was so bifurcated, I found myself trying to separate your issues, trying to peal them apart, and it made me feel a little weird. I don't even know if I'm explaining it well - it's like I wanted to interfere withyour grief evolution because of my own experience. How strange is that?

I am also glad you included reflections about being caught off guard by the talk show hosts you depended upon for adult companionship - about the bubbly discussion of new testing. With a prenatal diagnosis, that feeling permeates daily living. I've said I felt like I had the word "expendable" stitched across my maternity shirt - that feeling of self-consciousness, of feeling targeted is overwhelming in pregnancy post-diagnosis, at least for me, and it's mixed with your own feelings, doubts, fears - and that improves after the baby is here. The point when you don't go on your yearly march - those are the types of feelings one has in pregnancy post-diagnosis, like you want to curl up in a ball and wrap your hands around your belly and keep baby safe -- but the rest of the world moves on, oblivious to the impact certain discussions have on you. After 4 abortion offers (over the phone: OB, 2 perinatologists, and gen. counselor), I had a follow-up appointment with my OB and she said "abortion" in passing - probably a comment about other patients choosing abortion or something - in no way was she trying to push or hurt, and a week earlier I would not have thought anything of it - just conversation. But afterwards, just the word had this enormous power to hurt.

_________________
Nancy, mom to
Samantha (12)
Maria (9)
Elena(7)
Gabriella (4) (DS & repaired AVSD)
Our story: GIFTS - page 130

We are one if those weird situations. My Ob noticed the short long bones and jumped to dwarfism. I spent the last month of my pregnancy preparing to have a child with dwarfism. Then she was born everything looked perfect albeit a little small We stayed in the hospital a week because she had jaundice and was so little. We went home on July 3rd and I had to bring her back for a weight check on the 4th. The nurse goes her heart sounds a little off let me go get a Dr out of the NICU. He comes into the room and they start discussing her features. Finally I spoke up that I was in the room and would like to know what was going on? The Dr looks at me and goes I could be wrong but am probably not your daughter has DS. I put a go F your self look on my face picked her up and went to the car calling DH on the phone the whole way ranting first they tell me dwarfism, no DS I refuse to believe it til the results come back. The next day we met the cardiologist who confirmed she had complete AV canal defect, then he told me his favorite patients were the ones with DS. If he could that would be the only people he treated. The NP we were dealing with kept promishing they would do the genetics test but told me they only send it out certain days of the week.
Well I had a melt down that night and ended up in the ER with Kayla because she was just breathing too heavey(anxiouse mom lol) they took her to a different hospital while they were collecting all the blood they needed I asked this other hospital to please run the genetics test for me.
two weeks later I call the PICU Dr we dealt with and asked for her to please give me the results I had not heard anything yet. I was told that she was doing rounds and would call me back later, So I went grocery shopping. I found out while trying to do self check out at the grocery store and burst into tears. Bet you that grocery store worker never saw someone so flustered about trying to ring up apples. I then Pulled DH out of a great big meeting by having my friend call the commander and have it come down the great big chain that his wife needed him at home now.
Kaylas Dr's look back at it now a realize our situation was handled incorrectly. They should have talked to me not around me, they should have ran the test instead of putting it off, and I should have recieved the results in person not over the phone. One thing I have learned is I wouldn't change Kayla for anything. Wow this came out a lot longer than I thought it would lol.

_________________
Windy
[/url]

Well, even though some people roll their eyes when I tell them this, God told me I had a dream about it, I woke up, locked myself in the bathroom and cried. AS it turned out, the next week they found soft markers for it. Like Joanne, we did not do any more testing, I just knew.

Oh, and even the doctors that did the ultrasound said nothing, my midwife told us. She was WONDERFUL!

Once Nichole was born, doctor came in, asked my husband to sit down. he started by saying there were some things that concerned him about our baby. I stopped him and told him we thought she had Ds. He got very sad and said he was sorry. I told him not to be, God does not make mistakes. He said it was a good thing I was religious He so does not get it.

The day before we left the hospital he actually asked, "If you knew it was a possibility why wouldn't you do an amnio and take care of the situation!" Oh my goodness, that was it! Why would he say that? We were done with him. He is one of my least favorite doctors.

My midwife, on the other hand was wonderful. I just love her! She actually cried more about it than we did (at the hospital that is, once I got home, I was a depressed mess!)

_________________
Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

The last post to this was a while ago, but I need to share. There is something therapeutic to me about telling our story over and over again to anyone who will listen. I don't know what it is. I guess the more I talk about it the more it is real and the more 'normal' I start to feel again. I hope that doesn't sound offensive. I don't quite know how to word things anymore. Oh, gracious. I'll just tell our story now.

We did not know prenatally. Well, not officially. I had to have Level 2 ultrasounds because the dr. noticed Joshua's growth was not consistent (head was growing, pretty much nothing else was). As it turned out the Level 2 let us know we were having a boy. We're a rare breed that wants to be surprised on delivery day. :) We were given a CD of pictures and when we were looking at it there was a very obvious answer to the "Is the baby a boy or girl?" question. They made a big 'oops' putting it on! I remember being disappointed but then telling my friend that it wasn't a big deal, it wasn't the worst thing that can happen. And it wasn't.

The next ultrasound showed a bright white spot on Joshua's heart. For the life of me I can't remember what the doctor called it but it had something to do with muscle thickening. And then he told us it was a soft marker for Down syndrome. I cried. He said he would have considred an amnio, but that it woudl cause him too much stress. Oh, the reason for his inconsistent growth was absent-end diastolic flow. Basically the placenta and/or umbilical cord were not correctly working and Joshua was not getting all of the nutrients he needed. his brain, heart & kidneys were getting most of it and the rest of his body got the leftovers. Anyway, the doctor said he wasn't too worried about it and we shouldn't be either. We googled the heart thing when we got home and I found a list of characteristics on the Natl DSS website. The one that stuck in my head was the single crease on the palm. I don't know why that stuck out to me. Maybe it was God telling me to remember it.

So, we kind of forgot about it and went on with our pregnancy. I was put on bedrest in the hospital in December because the condition was worsening and a week and a half later my baby was born by emergency c-section. Three p.m on the 29th. He was 8 weeks early. He cried and I cried. I was so relieved to hear my 2 lb 12 oz. pumpkin cry. Ten days later we went up to the NICU to visit him and there was what seemed to be a crowd of people around him. In reality it was a couple of nurses and a neonatologist. We were told that the geneticist wanted to speak with us. My heart sank. I just knew what was coming. she came a few minutes later and asked us a couple of questions, like if my husband and I were blood relatives. Hmm...interesting. i almost laughed. I really wanted her to get the point. I could feel that pit in my stomach and my body was just gearing up to cry. I couldn't imagine that they could tell me my teeny little boy would have to have yet another thing to deal with in his young life. She started in on features. things that had been noticed. She mentioned the crease and I fell apart. My husband just looked at me and kept asking what, what? The geneticist looked at me and she was all sympathy and asked me why I was crying. She knew why I was crying. I told her that it was because she was going to tell me Josh had Down syndrome. And then there were just voices. Not quite like Charlie Brown's waa-waa-waa, but just unintelligible voices. She knew a pediatrician with a single crease in both hands. It could be nothing. I wanted to hit her. Here she was telling me my son might have something that was going to cause him to be teased and mocked and ignored (those were my thoughts) for the rest of his life, and then she's throwing me false hope. How dare she??? I didn't want to hear anymore. I held him and cried and cried for him. I was so mad at God for doing that to him. He was already a preemie for crying out loud. Why this too??

We received the 'official' result three days later. They found us a quiet, empty wing in the NICU and I cried while my husband, mother in law and I listened to the geneticist give us the most bleak outlook I had ever heard. He probably won't walk until he's three. He probably won't talk until he's 4. He has a 50% chance of heart problems, abdominal issues. He might live to 60. I truly hated her at that moment. Who did she think she was, dressed in her flowy skirt, perfect makeup and 20 letters after her name, to tell me my little baby, my baby boy, was only going to live till such and such an age. I get it, she has to tell the facts. But why would you tell someone when their baby is going to die?? I'm sorry. This must sound ridiculously dramatic. It's been 9 weeks and I'm still upset.

So, really long story, just a tad longer. I read everything I could. I asked a million questions. I met another mother whose baby was born at term with DS (they didn't know pretnatally either) and I felt better. I wasn't alone. My son wasn't alone. And I didn't feel quite so abnormal. See, the thing is, I have never thought of my son in that way, though I know there will be people who do. I thought it about myself. It's hard to explain, but I didn't feel like me anymore. I know that must sound selfish. But, meeting another mom, another regular mom made me feel better. Please don't be insulted. I don't mean to imply that parents of kids with Down syndrome are not regular people. Again, something I don't really know how to explain.

I am so glad I didn't know before he was born. He was under enough stress in the womb as it was and I was already so worried about him. God knew when to give us the news. I'm afraid i would have caused Josh more stress with all of the worry I would have done.

Sorry about the long post, but like I said, it feels better to talk about it more. Thanks for reading.

_________________
Debbie, mom of Lizzie (2 yrs) and Joshua (9 weeks-DS)

For you created my innermost being; you knit me together in my mother's womb. Psalm 139, v 13

Debbie, it *has* been a little while since we had this discussion, but I'm so glad you added your thoughts, anyway. It's *new* to you, and it's so good that you've reached out to share your story.

There are many, many women who know exactly what you mean, and who have felt exactly how you are feeling! I hope more will comment, here or on the main board.

You've done so many good things! Such as finding a real-life mom to a child with DS, finding Downsyn.com, and even, writing your thoughts and feelings down. Many new moms have done the very same things, me inculded!

xo

Jennifer Graf Groneberg

We learned just shortly after an emergency c-section. I was in recovery all alone and the doctor walked up to me and said that our son had been flown to another hospital. He was very very sick and then he used a string of words I could barely take in...chylothorax, pleural effusion, and probably Down Syndrome. Then he just walked away. I laid there all alone crying and crying. We had no idea that our baby wasn't healthy....
I just laid there wondering if "mongloid" was the same thing as Down Syndrome.
When I was taken back to my room I was wrapped in love and support from family and friends but I'll never forget seeing my door. They encouraged me to walk to help speed the recovery and I walked out of my door and down the hall. All of the doors had blue or pink ribbons on them announcing a brand new baby....
My door had nothing.
I felt as if even the hospital was not acknowledging that a new baby boy had been born. That door was the epitome of utter sadness to me. On my third day I walked down to the gift shop and bought my own blue ribbon and hung it on my door.
Needless to say, our son is our heart. Boy, those first few months were so hard though. I'm thankful to have been able to enjoy my pregnancy without knowing - I would've worried myself to death with the knowledge.

_________________

babystpierre wrote:

Needless to say, our son is our heart. Boy, those first few months were so hard though. I'm thankful to have been able to enjoy my pregnancy without knowing - I would've worried myself to death with the knowledge.

I *fully* agree with this statement!

_________________




Angela
Wife to Matthew
Mom to Andrew (3/24/06) and Benjamin --4/24/08 DS--VSD & ASD repaired 10/3/08
Intestinal obstruction repaired 1/13/09
Hypospadias & ventral hernia repair 8/21/09
Expecting Baby #3 in April 2010!



www.theamicks-angela.blogspot.com

You've said it well, and the "Normal" thing I totally get. Because it's new, it doesn't seem like it's the norm, but there are so many of us that have gone through and are going through the exact same emotions and experiences and makes it real and normal I too had a precursor, but did not find out until my Asa was born. His brain ventricle was measuring 11mm for a time and was told by a high risk OB that it was a soft marker for DS, there were no other signs or markers. I thought he was full of it, mean, and old. But he was right...

_________________




"Life is what you make it"

Jackie (33 yrs.) - wife to Brian (30 yrs.) and Momma to Asa (2.5 yrs.).